Announcements

This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
Subscribe to FREE Celiac.com email alerts
What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Gluten-Free recipes:
Gluten-Free Recipes
Where can I buy gluten-free stuff?
Support this site by shopping at The Celiac.com Store.

3 Year Old- Wait For 2Nd Biopsy Or Stop Gluten?

0

7 posts in this topic

Recommended Posts

We live in New Zealand. We have a family history auto-immune disorders, with one diagnosed celiac (my sister).

My 3 year old son has had classical symptoms of celiac disease (bloating, diarrhoea, tummy pain, irritable, lethargic) since Feb this year. He was eventually blood tested in June and came back with positive antibodies, which were very high. He had his biopsy on August 31st and on 10th September we were told the result was "inconclusive" - no flattening of villi but some cellular changes. In the meantime we had taken him off gluten and he improved rapidly during that 10 day period. The specialist has recommended that we re-introduce gluten so that he could undergo another biopsy, which is scheduled for no less than 3 months time, since we had taken him off gluten (for 10 days!!).

Has been back on gluten now for a month and has big bloated tummy, twice daily diarrhoea, constantly complaining of needing to eat, seems to always be in tears. He is pretty miserable. The second biopsy will not be until late January and I am starting to wonder if we may just forego it, and assume he is gluten intolerant on the basis of the blood test. Another three and half months of gluten seems like torture.

Is there any point to repeating the biopsy in view of his symptoms and positive blood test?

Share this post

Link to post

Share on other sites

Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

My first thought is - even if your son eats gluten for the next three months it does not guarantee a positive biopsy.

The evidence you already have should be enough to diagnose:

Symptoms - bloating, diarrhoea, tummy pain, irritable, lethargic

Positive Antibodies - do you know which tests were positive?

Biopsy - Inconclusive, BUT cellular changes noted

Diet - Symptom improvement off gluten / Symptoms returned on gluten

I don't see an upside to continuing another day on a challenge that is clearly harmful to your son. Have you told the doctor how tough the challenge has been? Perhaps they will diagnose once they have the added information of the dietary response. If the doctor continues to push for another endo, I'd look for another doctor. It would then be a clear case of the doctor sticking to outdated protocols as there are doctors that will diagnose based on the items you have listed.

I'd suggest getting written or electronic copies of all your son's blood work and endoscopy report. It helps to know which celiac tests were completed and the endo report can provide important information that is not always clear when the doctor verbalizes their findings.

Good luck to your family along with wishes for continued healing for your son

Share this post

Link to post

Share on other sites

Hi all, thanks for your replies. The specialist told us that he was their "one-child-a-year" who has positive blood test, but nothing conclusive on biopsy. I don't think that there were any faults with the technical aspects of the biopsy; there were 10 samples taken altogether and the scope went as far as the 3rd part of the duodenum.

"My first thought is - even if your son eats gluten for the next three months it does not guarantee a positive biopsy."

That idea has crossed my mind. Which then leads to the question of what we would do if that happened. Most likely we'd refuse a 3rd biopsy and take him off gluten. Seems then that the only justification for a 2nd biopsy is to achieve the "gold standard" for diagnosis.

"Positive Antibodies - do you know which tests were positive?"

Yes - tTG was 262 and DGP was 170. I understand that these are quite specific markers for Coeliac?

"Have you told the doctor how tough the challenge has been? Perhaps they will diagnose once they have the added information of the dietary response. If the doctor continues to push for another endo, I'd look for another doctor. It would then be a clear case of the doctor sticking to outdated protocols as there are doctors that will diagnose based on the items you have listed."

We met with the gastroenterologist last Monday, so 5 weeks after initial biopsy, 4 weeks after his 10 days off gluten. We did explain that his symptoms improved quickly off gluten and that they are back with gluten. I am going to see whether we can get a second opinion, as it does seem like the specialist is focussing on the gold standard of biopsy, rather than what is in the patient's best interests.

Share this post

Link to post

Share on other sites

Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

Yes - tTG was 262 and DGP was 170. I understand that these are quite specific markers for Coeliac?

That is correct.

-tTG (tissue transglutaminase)is the most common screening test for Celiac Disease.

-DGP (deamidated gliadin peptides) is used to measure the antibodies that are created in direct response to peptides found in one of the proteins of gluten.

Two high positive results indicates Celiac. Add to them the positive response to diet and cellular changes mentioned in biopsy and it paints a clear picture. It is not uncommon to have a doctor that is not familiar with Celiac - if there is a Coeliac Support Group in your area, they can often direct you to a gastroenterologist that specializes in Celiac Disease should you decide you'd like a second opinion.

One other note - Celiac is genetic. You, along with CaveDad and any siblings should be tested as well. It is recommended that family members be tested every 3-5 years - more frequently should symptoms arise.

Take care!

Share this post

Link to post

Share on other sites

Your poor little guy. Everyone has given you good advice, but I just wanted to add that I was diagnosed on symptoms and a high ttg IgA and EMA alone. No biopsy needed. I responded well to the gluten-free diet so I consider it case closed. I would be partial to skipping your son's biopsy and going gluten-free unless you need that official diagnosis for something now or in the future; three months is a long time to feel poorly unless there is a great need of it.

I think you need to take a little time to learn about DH and celiac disease. Celiac and DH are technically autoimmune disorders. This is about DH:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
Learning about celiac disease (overview):
https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/
Testing for celiac disease via blood test:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
I think the full panel is around $400 and the basic budget screening which is pretty darn good (TTG IgA) is under $100.
If you are paying for your medical care (even under insurance) you have the RIGHT to copies of everything. So, when your doctor orders a lab test, ask for a copy of the order, so YOU know what he is ordering. Then you can google to see if he/she is ordering the right things. Get a copy of the results. Get a copy of the costs/receipt if you are paying out of pocket. Put your requests in writing.
I think some labs and doctors use the term for gluten allergy incorrectly. 1. There is a wheat allergy (IgE) that is like a peanut allergy which can cause anaphylactic reactions (throat swelling, breathing issues, drop in blood pressure). There are some blood tests that are about 50% accurate, along with skin scratch tests (also not super accurate. 2. There is celiac disease (autoimmune that when exposed to gluten attacks the intestinal track, skin or brain) triggered by gluten (I gave you the blood tests: TTG, DGP EMA). 3) Non-celiac Gluten sensitivity or Intolerance which is like celiac in terms of symptoms, but no antibodies are generated and intestinal damage does not occur. This diagnosis is reached when you have failed the first two as there are n tests for it.
Read through the DH section of this forum for symptoms and tips.
I hope this helps.
Finally, if you really suspect DH, you can always go gluten free. Keep in mind that you need to be strict and you need to adhere to the diet for at least six months to a year.

I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms. As we know, no symptoms does not mean no damage being done. I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on. I never did get the intestinal symptoms others get.
This for me is the hardest part of having Celiac's, figuring out what did it. Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse. It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care.

I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive. All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given. My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing. Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth. I have not developed any more AI diseases than the 4 I already have and I call that a big win.
I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing. I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it. If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back. Repeat endoscopy's are really for those still having problems.

Follow Us

Like us on Facebook

About Us

Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!